Tuesday, January 02, 2007

Happy Holidays 2006

Once again, no spell check. I think it's a Mozilla Firefx problem, but I can't post pics from Explorer. Oh, well.
January 1, 2005 we moved into our first house and here she is a year later! It's much larger than it looks because it is looong. It's a duplex (note the two mailboxes) and we rent the front unit to my dad and Derek and I live in the back apartment. Here I am posing with the Christmas lights Derek put up (what a great job for his first time ever!) the day after our city got dumped on by the worst snowfall in 30 years. The city was shut down, even the transit system and every school. It's been such a wacky winter, we didn't have any snow accumulation before that day, it melted by the end of the week, and we haven't had any snow since! Yup, it was a green Christmas this year. But a great Christmas nonetheless!

While in the middle of my steroid-enduced "Euphoric Energizer Bunny" state that lasted from mid-November to early December, I had the bright idea of hosting a Christmas feast/party at our place for 17 people. I started to doubt my sanity as I slowly tapered off my steroids during December and felt my get-up-and-go slowly get up and go. I took my last dose the day before the party, and had enough umph still in me to pull it off virtually all by myself (thank god for mom and her husband Dave who did all the chopping though!). It felt really good to be productive and self-reliant again-- I had a lot of fun preparing and then eating and kickin' back with friends!

I know, you're wondering what on earth a vegan couple served to a mish-mash of omnivores, vegetarians, and one friend with celiac disease. Well, I wanted to keep it really simple, so I made things that were easy peasy to prepare and served it buffet style:

  • Homeade hummus, babaganoush and olive tapenade served with crackers (rice crackers for celiac) prepared the night before
  • Rosemary and olive oil roasted potatoes
  • Green beans roasted in rasberry balsamic vinegar and olive oil with dried cranberries and slivered almonds
  • Mock "ham" (soy based) baked with pineapple slices -- had many omnivores comment on how good the fake ham was!
  • Mock "shrimp" ring (also made from soy) -- again, even the real shrimp lovers were impressed!
  • Cashew and poppy seed cabbage salad
  • Portobello mushroom bake-- i have to share this recipe because it is sooooo delicious I think everyone should know about it.
  • 3 pies. I made an apple pie and a chocolate mousse pie made with tofu that was literally to die for IMO, and I purchased a celiac friendly walnut pie that was super scrumpcious!

Portobello Mushroom Bake

1/2 c. almonds
1/4 c. olive oil
1/4 c. Braggs or soy sauce
1/4-1/2 c. water
2 tbsp balsamic vinegar
3 cloves garlic, roughly chopped
1 tsp dried rosemary
1 tsp dried oregano
4 large portobeloo shrooms, cleaned and stems removed
1 medium onion, chopped

Preheat oven to 350F. In a blender or food processor, blend the almonds until powdered. Add all other ingredients and blend until well combined. In a large bakind dish, place mushrooms upside down and pour mixture evenly overtop. Bake for 20-25 mins. Makes 2-4 servings.

Our first Christmas tree. We picked it together, Derek chopped it down himself from a tree farm. Even though we've been living together for 7 years, we've never done the tree thing. I think it was the combination of it being our first house and the fact that I was soooo into the Christmas spirit this year that we did the tree, the lights, the party, and also for the first time exchanged stockings.

While it is my 3rd Christmas with cancer, it is the first one in that time that I've felt really well, even though technically, I'm much sicker. Last year sucked because I got the blow a couple days before that I had my 1st recurrence (well, technically my second) and I was still getting my energy back after stopping Interferon 2 weeks prior. I was on my way to Kingston with my brother by bus and scheduled in an appt. with my onc during our layover in Toronto when I got the news. I gave my bro the gifts and hopped on a bus back to London because I needed the comfort of Derek's arms. He can make everything ok just with his embrace. The year before, I had just completed my highdose regimen and felt too crappy to travel to Kingston.

This year, my mom came to London for Christmas! Now that we have a house with a diningroom we can do Christmas! And, we did do it, quit nicely I might add. Derek cooked the entire meal (minus the turkey for the meat-eaters) thank god because by the 25th I was feeling really crappy from the steroid withdrawl. I was tired, nauseated, bloated, lethargic. He did a fantabulous job with dinner, I just wish I was able to enjoy it more. The rest of the fam (just mom, Dave, and my brother) sure enjoyed the feast though. Derek and I had a yummy Tofurky in case anyone is wondering what we eat instead of birds on holidays.
This is us on New Year's eve in Toronto. You caught me, I'm wearing the same top I was at our party. All I can say is, I like it! It has flowy arms that hide my lymphedema quite nicely without being a big frumpy sweater.

I'm really not liking how fat my face is, I think because of the steroids. Well, I'm off them now so it should go down soon I hope. I don't recognize myself when I catch glimpses of myself in windows or store mirrors. At home, I don't notice as much. I've gained almost 10lbs. since November and am at my highest ever weight because of it. I think it is because the steroids turned me into a ravenous pig for a few weeks while I was at the peak dose. The roundness of my face could be pure fat, but I am hoping it's the typical "moon face" that people get as a side effect of Decadron which goes away sometime after you stop.

Sure, it's all so trivial and so petty compared to what others go through. And I tell myself that. But the automatic thoughts are hard to push away. It's hard to look in the mirror and barely recognize yourself. It's hard to see the effects of cancer treatment so blantantly displayed in front of you. It's something I haven't had to deal with yet in my journey. All my scars can be hidden by clothes. But now, I have a big fat face for all to see and my right arm has ballooned even more since I've had those wounds that got infected and STILL won't heal.

In fact, I've had a homecare nurse come everyday to clean, pack and dress the wounds for a month and a half and while they were progressing slowly, it appears I have another infection and one wound that was 90% healed and didn't need special attention is now infected too bringing the count to 4. I find out tomorrow if I'm suppose to start i.v. antibiotics.

Anyway, I know I shouldn't care about how I look, but I do. I want to be attractive to my husband. I don't want to be a chubby, round faced, double chinned, fat-disfigured-armed, tumour ridden wife. He says I'm beautiful anyway, and I do believe him, but how the hell am I suppse to feel pretty and sexy inside when I'm not myself anymore? When my breast has a tumour again. When my wrist hangs limp and I can no longer straighten my elbow. When I can't do my hair nicely, can't even put it in a pony tail because I can no longer manipulate an elastic, hold a blow dryer or flat-iron. I have to wear baggy shirts so my arm isn't as noticeable. No more cute tops for me. I miss having showers and taking real baths. I can can't get my wounds wet so I have quick uncomfortable and shallow baths and Derek washes my hair while I lean over the tub. This has been going on for months as I have surger after surgery and now those damn wounds that won't heal. And more surgery likely to come. It would be so nice lay back and relax in our deep clawfoot tub again...

I beat myself up even more for caring about these things. There are far worse problems in the world and people suffer much much more. But psychologically, I get it. With every new "loss", I will go through a period of mourning until I am able to accept the new normal. I had more or less accepted the state of my arm until it recently got much worse and bigger. It will take a bit to adapt to the new larger state and the fact that I will never be able to whip my hair up into a pony-tail again. My weight gain makes me think mostly about how I can't just jump on the elliptcal we bought in September or go for a run anymore. Maybe one day I'll work out again, but it has been really frustrating being forced to be so lazy the last few months with all the pain and then surgery after sugery. We should have bought a good recumbant bike instead of the elliptcal because I think that would be fine on my arm an neck. We couldn't have known though.

God, I'm tempted to erase this because I feel like such a whiner. But I know it's natural to have these ups and downs. And I know it's ok, even if it isn't stoic or graceful, to mourn every loss that comes along. Just like I had to mourn the loss of many of my dreams, like having children. To be resistant to change is natural, especially changes that were forced upon me and which make life just that little bit more difficult when life seemed difficult enough. Having to give up even more control of my body is difficult to accept but I'll get there, it's a process and this whining is part of it.

Every Christmas, New Year's and birthday that passes since I've had cancer seems like a miracle because I know it could easily be my last, so much more so than the average person. I'm so thankful that I've now had 3 Christmas and soon 3 birthdays (pretty darn confident and hopeful I'll make it to Feb. 7th, my 30th birthday!) since being diagnosed when it's always in my mind that it could be my last. This year more than ever, since I've progressed to stage 4, I am even more aware of this possibilty this could have been my last Christmas. I think that that is really what was behind me "getting into the spirit" and pushing for a fun New Year's out instead of the usual house party or just staying at home. I want to have great times with family and friends and make sure I do things I want to do now instead of bowing out out of pure laziness and the knowledge that there is "always next year". I can't take that risk because I may not get the chance. In 2004, I was so unsure if I'd be around in 2005. I've made it to 2007, so much longer than many with this same disease. I'm so grateful for this time yet so scared my time is running out. I feel like a ticking time-bomb. I hate this fucking disease! One day at a time, I'm just trying to buy time until there is a cure.

7 Comments:

At 12:06 AM, Anonymous Anonymous said...

Hi Sarah!
This is a delayed response from your curious like george posting. I admit that I have been cyber-lurking and am happy to tell you about myself. I had a melanoma removed from my back at 15. (I'm currently 29.) Clean borders. Since then I have had over 30 moles removed and so far so good. Two summers ago, my step father was diagnosed with melanoma and it had progressed to the lymph nodes in the groin. Scary time. He struggles with lymphadema in that leg but is currently NED. We are all thankful daily for his current good health as well as our ability to get him into MD Anderson.

My mother frequents one of the melanoma support sites and stumbled upon your blog. She sent me your link because she said that you reminded her so much of me! And, I must say, I do see our similarities! Your humorous spin on things really cracks me up- I think maybe you could do stand up comedy :) FYI I'm an rn and i completely side with you on the bathroom incident. I also found your blog about theories of healing and blaming people for their illness so true and I'd never even thought about it! (ie: eat more blueberries and you wont get cancer).

But, the real reason that I keep on reading is that, as strange as it is, I cant help but look in on you because I like who you seem to be and I'm cheering you along the entire way. Some of your emails break my heart- not out of pity, but because you really seem to be a beautiful, loving, and courageous woman that certainly doesnt deserve any of this. You are, as my mother once put it, "willow and steel." You are so graceful and brave and I really admire the way you have learned to try and see things differently (ie. dreams are an illusion, plans are only plans and not necessarily what your life is meant to be.) You are so likeable that I cant help but grieve each change
a little with you. Thanks for sharing your life~
Looking in on you,
Korie

 
At 2:22 PM, Anonymous nicole said...

Hey Sarah,

I'm glad you didn't delete this. I find myself ignoring my journal and retreating inside lately because I'm too overwhelmed to write about the depressing and exhausting thoughts running through my brain. And I'm "healthy" now since I finished my treatment in April and scans are clear.

I'm going to try and write some this week. I'm so glad you keep at it.

-n

 
At 8:54 PM, Blogger King (Kathie) said...

Sarah,

Thank you so much for not deleting this entry. I can relate to so much of what you are saying. You need to vent. These are all very normal feelings and you're not whining.
I love your pics - they are beautiful - you, your husband, your home, the tree, etc.
It has to be awful not taking a real bath or shower for so long. That is a luxury that most of us just take for granted.
And barely recognizing yourself in the mirror is so sad, too. It was like that for me when I was on Interferon. As sick as I felt, I just never pictured myself looking like "that". And my liver resection scar is SO ugly - it does look like a "shark bite".
I'm sure that you don't even feel like you are taking two steps forward and one step back these days. I pray that you get a break real soon. I'm so sorry that you are dealing with another wound infection.
You are so brave, you are so strong. I admire your courage. I have no doubt that you will make it to that 3-0 and many more birthdays after that.

King (Kathie)
Stage IV Liver mets 7/05

 
At 9:20 AM, Blogger Carver said...

Hi Sarah,

I love the pictures of your house in the snow, of your Christmas tree, and of you and your friends, and of you and Derek. I am so sorry you've had to deal with the infection so long and I am also sorry that you've had to deal with the mirror issue. I think you look beautiful but that's not to minimize that looking into the mirror and not seeing yourself is no fun at all. I can so relate to that and although it may not be as big as the melanoma issues, it still sucks. It is so honest and natural for you to be bothered by it. Your courage radiates from your blog and I have the utmost respect for you. As ever, Carver

 
At 2:42 PM, Blogger Heather said...

Hi Sarah,

I had an 'is this it?' moment the other day, sometimes all this crap can't help but get us down. Feeling horrible takes it's toll...

I'm glad that residual 'roid rage enabled you to enjoy your Christmas party, I'm hoping that the effects of decadron wear off for you soon, I understand everything you're saying.

Nothing else to say but hang in there, and you know I don't mean that lightly. Sometimes the blows just seem to keep on coming, it's hard to weather them and every setback takes time to get used to. And sometimes it feels like it's gone on forever, like you not being able to take a shower. I really do understand.

Thinking of you, and wishing you the best as always,

Heather

 
At 4:26 PM, Anonymous Anonymous said...

Hi Sarah,

I am also glad you did not delete your entry. This space is for you and you dont have to justify anything you ever put in it. Your allowed to feel all you feel and I hope you will continue to vent as much as possible. So many people have gravitated towards you and are drawn to your strength during this struggle.
It was really interesting reading your discussion on greiving each new new change that occurs in both your body and the disease. It makes so much sense and I had not thought of that before.

Keep on bloggen girl when you can and have the strength. Like everyone else out there in cyber land reading your blog... I am thinking of ya!

Love Liz

 
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